Very few studies on ME/CFS focus on housebound patients — 0.5%, or 5 for every 1000 studies, according to Pendergrast et al. — and those that do tend to have very small numbers of participants, by necessity.

At first glance, the housebound vs nonhousebound study seems very straightforward: Pendergrast et al. aimed to help prove that housebound patients are genuinely, objectively sicker than their more mobile counterparts.

Participants in the study received the DePaul Symptom Questionnaire, specifically aimed at ME/CFS symptoms, and the SF-36, which measures physical and mental function. Four groups of patients were involved: one from the U.S., one from the U.K., and two Norwegian cohorts. The U.S. sample only required that patients self-identify as having ME/CFS; however the DePaul Symptom Questionnaire, which includes questions that relate to the CCC, ICC, and Fukuda criteria, was utilized to ensure that patients had the symptoms of the disease. The U.K. sample was composed of participants who had been referred to Newcastle-upon-Tyne Royal Victoria Infirmary clinic for symptoms of ME/CFS. The Norwegian cohorts were gathered from a CFS self-management program and from inpatients and clinic patients at a multidisciplinary ME/CFS center, respectively. The study surveyed over 500 patients in total.

Approximately 25% of patients are housebound or bedbound.

Only 13.5% of patients are able to work. This figure includes patients who work part-time.

A relapsing-remitting course, in which the patient’s symptoms sporadically worsen, then improve, is significantly more common in minor-moderate patients than in severe patients.

The sicker an ME patient becomes, the less likely they are to believe their symptoms are ‘in their head’.

Approximately 2/3 of patients reported that their illness had an infectious onset. The next most common trigger listed by patients was severe stress. Patients had the option to list multiple triggers for their illness.

Very similar percentages of patients reported rapid (<1 month), gradual (<1 year) and slow (>1 year) onset. Patients who were severe were more likely to have experienced a rapid onset; however, many minor-moderate patients also described their illness as rapid onset.

There were no differences on emotional or mental scores between severe, minor, and moderate patients. In other words, psychological wellness and emotional distress were not linked to illness severity.

Housebound patients’ fatigue was less likely to be alleviated by rest.

Questionnaires can be very taxing on mental energy when cognitive difficulties rear their ugly head. Are the most severe still excluded my feeling is they will have been and the tip of the iceberg is all we see represented.